The Diagnosis

After a four month wait to see the Developmental Pediatrician, we finally got a diagnosis: Autism Spectrum Disorder. Even though I had come to terms with the fact that it was Autism more than 6 months prior, it still stung like hell.

The appointment went really well. My husband and I both liked the developmental pediatrician, and felt that he truly got to see Aidan’s current skill and ability level. Before he gave us the diagnosis, I remember being so impressed that my son could now do many of the things they asked of him. He even said “hi” to the doctor as he walked into the room! We were pleasantly surprised. Aidan was doing so much better, but we still had a long list of concerns.

The doctor noticed that we had Aidan on a GFCF diet and asked if it had helped. We told him him about Aidan's sleep improvements and his increase in language within days of going on the diet. His response was, "Well, none of the diet stuff has been proven, and you will come across several people claiming to cure Autism, but ABA is the only proven therapy that allows children to lead a life indistinguishable from their peers." Of course we just smiled and said, "OK" but I knew ABA and therapy alone were not going to get Aidan to were he needed to be. We still had many concerns that I could not see ABA fully addressing. 

Below is a full list of what our concerns were at this time. The concerns with lines drawn through them show concerns that we no longer have, and the ones with asterisk are “symptoms” that have been greatly reduced (just six months later!):

1. Aidan appears to have little seizures at times. Sometimes he will stand in place and tense his entire body, clench his teeth, fits, and shake. We can’t tell if he does this because it feels good to him or if it is something he can’t control. **

2. Aidan has lost words & greetings that he once used regularly (ex: saying and waiving hello and good-bye). He has also lost skills (ex: completing puzzles, being able to draw a circle or line when asked, following basic directions)  

3. Aidan shows new anxieties/fears to once familiar things (ex: climbing ladders at the park, swinging,  walking up stairs that are “open”)  

4. Aidan is easily excitable and helps soothe himself by jumping up and down repetitively in place**

5. 99% of the time, Aidan will not respond to his name. 

6. Aidan seems out of sync with what is going on around him at times. He is in his own world when playing with certain toys or while involved in certain activities. He does not even let his Mother or Father interact with him.  

7. Some OCD behaviors- lining up toys. **

8. When he points out an object (For example, says “cat”), if you respond by saying “yes” or “you’re right!” he will continue to say “cat” until you say it back to him, “yes that’s a cat” or “cat” then he can move on.  

9. Aidan has difficulty running, and an awkward way of walking at times 

10. Hard time transitioning. Will flip out even when we are saying good bye to a stranger.  

11. Inappropriate behaviors with strangers (grabbing at stranger’s face to get attention). Tries to put his fingers/hands/feet in other people’s face **

12. Turns feet in and drags them when he walks/ runs. Seems like a drunken walk  

13. Defiant behavior (you want him to do something- he will pretty much always do the exact opposite)

14. Lethargic when out and about, tons of energy the moment we get home (won’t walk when we are out because he seems too tired)

15. Restless leg syndrome. He is jumping, kicking, and stomping constantly. He CAN’T keep his legs still 

16. Slurred and “made-up” words to ask for things at times. He can’t say words that he has said 100% clear in the past

17. Laughs at nothing.

18. Squints his eyes as if he is having trouble with his vision. Like he can’t see straight

19. Perseveration that redirecting cannot stop (repeatedly saying oops, uh-oh, so big, etc. out of context)**

20. Scripting/Echolalia- will recite lines from Blues Clues or things that my husband and I have said to him out of context

21. No interactive play

22. Unassociated, but consistent behavior or words when upset (now it’s “night” or “done”– used to be clapping & saying yeah)

23. Still not understanding or responding to simple instructions (i.e. hold-on, stay there)**

24. Thinks of timeout as a game – does not understand

25. Aggressive behavior- When Aidan  gets upset over the smallest thing, he will throw his toys, clear tables, bite us, or scratch and hit us. It is very scary and not something we have been able to control. We worry about other people’s safety around him when he gets upset.

26. Obsession with fans- wants to turn on every fan in the house and just watch it spin

27. When he gets upset he cannot be consoled

28. Significant receptive and expressive language delay

29. Has the capability to use a fork or spoon but refuses, he has to touch every piece of food before he will put it in his mouth

30. Will break down crying if certain strangers or “newer” acquaintances approach him or just say hi 

31. Extremely sensitive to certain sounds and when he hears them cannot be consoled. Not necessarily loud or soft sound but gets upset when he hears a cow, duck, or horse sound and cannot be consoled

32. Does not always play appropriately with toys. Will set up his favorite toys on play table in a specific way and then no one else can move or touch them.

Had we come up with this list before starting the diet or working with the Thoughtful House, these concerns would have been on the list as well:

-  Difficulty sleeping. Sleeps approx 5 hours per day.  (Later found out this is a sign of food allergies and/or vitamin deficiencies)

-  Puts constant pressure on his stomach (Later found this was food allergies & bacteria/yeast which caused stomach discomfort- leaky gut, etc.)

-  Spins in circles while looking out of the corner of his eye (Vitamin A deficiency and/or yeast)

- Eye stims – sometimes he would roll his eyes to the side or like he was rolling them in back of his head (later found out that this is tied to Mercury toxicity and Vitamin A deficiencies)

- Overly attached to Mom. I couldn't leave the room or do anything else with out him getting upset. Wouldn't even let Dad put him to sleep at night. EVERYTHING had to be done with Mom.

Looking at this list again makes me realize how far Aidan has come. I am so proud of him, and also proud of my husband and I for not taking "no" for an answer. We still have work to do, and I will not stop until every item on our list of concerns is gone. I look forward to the day when I can have a conversation with my son, and know that he understands just what I mean. I look forward to the day he can come home from school and tell me all about his day. I look forward to the day that I take him to the park and watch him play with other children.

Being the parent of a child on the spectrum can truly be a special thing. I find that I no longer take any of the little things for granted. For so long I took Aidan's ability for granted. I would watch him run, jump, and climb at the park and it was just what he was supposed to do. When he lost that ability, it scared the hell out of me. All I wanted was for him to do  the things that he was once able to. Every little bit of him that we get back, has been twice as special to me. I absolutely LOVE watching him at the park now. It makes me so happy to see him have the energy to run and climb, and use his words to ask me to push him on the swing. Just six months prior to this I was so scared that I would NEVER see him do these things again. 

I know that we are nowhere near the finish line, but I share this information because I want other families to know that you CAN and WILL see improvements in your child. It may take several months or years, but it is possible. 

It upsets me that there are still pediatricians that tell parents their child will never talk, never be able to make friends, and never be able to show their feelings. It makes me upset that there are pediatricians who give the Autism diagnosis and in the same breath say that the diets and alternative treatments have not been proven and are really just a waste of time.  While my son is not recovered, I have seen him go from an angry little boy trapped in his own world, to a boy who can now tell me most of his needs and wants. My husband and I have seen steady improvements since we started this journey, and we know that many of them came from treating his underlying medical issues. It has been a long year of diets, supplements and therapy, but it feels so wonderful to look at that long list of concerns and see that over half of them are GONE. 

My hope is that in another year, all of our concerns will be gone and Aidan will be able to start Kindergarten in a typical class. Both of his ABA therapists have told me that this is an attainable goal, but the school district (mostly people who think there is no "recovery" from Autism), thinks I am shooting for the moon. Watch us prove them wrong...

Here we go…

Within one month of doing the protocol that the Thoughtful House suggested, we were seeing improvements. The dark circles under his eyes started to go away, and as we completed a round of Diflucan, we heard him utter his first descriptive 2-word sentence since his regression, “fish swimming.” He said this as he lifted a toy fish up and moved it back and forth. Aidan was now almost 3 ½, and he was starting to do the things that we saw glimpses of when he was 2.

When we started adding in supplements, we found that not everything agreed with him. This made the process take a bit longer. I would add something and notice that it would make him constipated or aggressive, and then I would have to find a better alternative. Cod liver oil/ fish oil has always been an issue for us. It wasn’t until recently that I realized that it was because we were using orange or lemon flavored oil. Aidan just has issues with citrus fruits for some reason. Nordic Naturals Peach flavored Cod Liver Oil has been a winner for us.  The original calcium/magnesium supplement we had him on really bothered his tummy. I found the Thorne Cal Mag Citrate to be a perfect combo. We noticed a real improvement in Aidan’s bowel movements once Vitamin C and Magnesium were added. I know a lot of people have diarrhea prone kids, but mine was always constipated. Aidan would go 2-3 days without pooping. When we first started the GFCF diet, and added enzymes he began going daily. Then we switched to the Specific Carbohydrate Diet (which was NOT a match for him in the beginning!), and he got really constipated again. After this, I had the hardest time getting him regular again. The magnesium and vitamin C definitely helped. I definitely plan on writing my next entry on our experience with the Specific Carbohydrate Diet. It can be a miracle worker for some kids, and disaster for others.

At this point we had just finished a round of antibacterial and antifungal.  Aidan was now taking a multivitamin, some extra vitamin C, fish oil, probiotic, calcium and some magnesium.  Now it was time to put him back on the Specific Carbohydrate Diet at the advice of our Nutritionist from the Thoughtful House. I was very nervous because we had such a bad experience the first time around. 

Enter the real DAN! Doctors...Thoughtful House Center for Children

So, Aidan’s occupational therapist put me in contact with another patient’s mother who had some success using biomed to help her son. She immediately recommended the Thoughtful House Center for Children in Austin, TX. As if the stars were not already beginning to align for us, my husband’s job was moving us to Texas! This was perfect!

Things were beginning to fall into place. A few months later, we had our first appointment with the Thoughtful House.  It was exactly what I hoped for. They understood every symptom, regression, and behavior that I explained. No one judged, or watched Aidan to pick apart his every move. For the first time, I felt like I was in the presence of people who truly wanted to help my child. I knew we were on the same page. I wanted my son to be healthy again, and they were there to make sure that we were doing everything possible to make that happen.

I handed over all of the test results from our previous DAN! Doctor, and within minutes I heard the words, “So it looks like he may have some toxic levels of mercury and lead”

JUST LIKE I THOUGHT! Ugh! I wanted to go back to our last DAN! Doctor and say, “Why do you even order tests that you can’t decipher the results?”

During our visit, we also found that Aidan DID have some issues with bacteria. The plan was to treat the bacteria, add supplements (more vitamin D then just 2000 IU!), and then schedule a follow up appointment to discuss MB12. YES! Finally we are getting somewhere!

That night when we went back to our hotel room, I cried. I was so happy because I knew we were taking the first step to healing our baby’s little body. I imagined him looking at me without puffy, dark circles under his eyes. I imagined him having the energy to do all of the things that he could once do! And while I dreamed of the progress he would make, I prayed for every other family that I met in the waiting room of the Thoughtful House that day. I met Mothers and Fathers that had driven or flown in from out of state, and in some cases the other side of the country, just to take their child to the Thoughtful House. I felt so lucky that we lived so close. 

Wake up! Your son has Autism!

Autism. Ugh! One year ago I had trouble saying, typing or even thinking of that word. It was my enemy. When my friend said that she thought Aidan had Autism, I decided at that moment that I wanted nothing to do with her. How could she even think of that word when describing Aidan? There was no way he had Autism!

The word Autism swam around inside my brain from the moment she said it. I couldn’t sleep for months. I couldn’t eat. I couldn’t think straight. I needed to know what was going on with Aidan, and I was determined to prove her wrong.

I made an appointment with early childhood intervention to do a full evaluation. When we went in for the appointment, Aidan couldn’t do anything they asked him to do. Things that I KNEW he could do, and things that he had done when he was 12 months old and 18 months old. When we left the appointment, I remember trying to hold back the tears until I got to my car, but I couldn’t. I broke down sobbing into my husband’s chest as we stood in the parking lot. He thought I was crazy. I still remember him giving me the look, like, why are you so upset!? He had no idea how serious this was and what was coming, but I knew.

At that point, I KNEW that something was wrong, and that for months I had been trying to make too many excuses for all of his odd behaviors and developmental lags. I was done with living in denial. I just wanted to know what I needed to do to help our son. I was finished listening to everyone tell me that my son was perfectly fine and that everything was ok.  I felt like no one was listening to me.  My husband, my parents, my brother, my friends…everyone was down playing my feelings. I was just the crazy overreacting Mother, and Aidan was going to be fine. The only person who would listen to my concerns was my friend who had mentioned the word Autism to begin with, and I was still irritated with her. Even when I knew it was Autism, I didn’t want anyone else to know. I know that sounds ridiculous and crazy, but I felt like if no one was there to know about it, and say it out loud, then it wasn’t real.

I started searching the internet, and looking at symptoms of Autism. There were definitely things that caught my attention, like, “Does not respond to his/her own name”, “Does not play with peers”, “language delay” but all of the symptoms like “head banging”, “does not play with toys appropriately”, “spins wheels”, “flaps arms”, “toe walking”,  “does not engage in imaginative play”, “lack of eye contact,” etc. were not symptoms my son had ever exhibited.

Then, a friend confided in me that her son had been diagnosed with Pervasive Development Disorder (PDD), and she thought that Aidan showed some of the characteristics of PDD (which is an Autism Spectrum disorder). She gave me a few books to look through. One of the books was by Jenny McCarthy and Dr. Jerry Kartzinel, Healing and Preventing Autism Spectrum Disorders. When I picked up the book, I thought, “healing? How do they do that” So I read a chapter on diet, and how the gluten free casein free diet seems to help a lot of children with ASD. The explanation made so much sense to me-  the proteins in gluten and casein are not fully broken down by people with gut issues, and this can create opiates in their blood stream. Ok, there is a much longer explanation than this, but that is the short and sweet of why so many people try this diet.

That night I told my husband that we were going to put Aidan on the diet. No one could tell me no! The very next day I put Aidan on a gluten free casein free diet. He hated it, of course, but I didn’t care. If this would help, we were going to give it a fair try.

Something doesn't seem right

As we approached Aidan’s second birthday, I noticed that he wasn’t adding any new words to his vocabulary, and all of the sudden, it seemed to take more effort to get his attention. I would call his name 4 times with absolutely no response. I thought it was strange, but I didn’t worry because he would always eventually turn and look at me. I really thought that he just didn’t want to listen to Mom, because he always seemed to respond right away if it was in reference to something he was interested in, like, “Mommy made you cookies!” : )  

During this time, I remember feeling like more of our day-to-day routine was becoming a struggle. Everything was a struggle unless I carefully planned things out well in advance.  The tantrums would come out of nowhere and last a loooooong time.  I started dreading leaving the house for fear of other people seeing his behavior. If one thing did not go his way, it was an all out war! He would throw anything in sight and just go NUTS!  Let’s say he was building a tower with his LEGOS (which he always loved to do), if one piece fell off he would scream and break down the entire tower, throwing each piece across the room. Just imagine when he would get mad in restaurants! It was AWFUL! I always got those glaring looks like I was the worst parent on the planet. One time, when we were at home, I remember leaving him on the ground to throw a fit, and almost an hour later, he was still lying in the same place on the ground.  I thought that we were beginning to experience the terrible twos and I just knew he got his stubborn attitude and temper from me. As crazy as it sounds, I truly thought this was just a phase. I thought that when he hit 2 ½ he would be able to express his feelings, and these insane tantrums, would start to go away.

I remember reading many books around this time, but one really seemed to help me put things into perspective. Raising your Spirited Child, by Mary Sheedy Kucinka. This book summed up Aidan inside and out, and it helped me see his “difficult” personality traits as positives. Aidan was a kid who knew exactly what he wanted and would never back down until he got it. As frustrating, and as hard as that made things for me, wasn’t that a really good personality trait to have in the long run?

When Aidan turned 2, he had added a few more words to his vocabulary, and I felt my fears slightly fading. We went to his 24-month check up, and he hit every milestone, except his speech was definitely at the lower end of what was considered average. Did the doctor tell us we needed to have him evaluated? Of course not! “Boys talk later,” were his exact words.

Speaking of doctors, remember the easy going kid that I talked about in my first blog post? Well, up until that kid was 8 months old, he never had a problem with a visit to our doctor. By the 12-month check up, I began to dread going in to visit the doctor. Aidan would cry and try to run away from the doctor the whole time, either signing or saying, “All done!” over and over. He could never relax. It was a nightmare for them to get his weight, height, temperature, etc. I always thought that it was because our pediatrician was a douche bag (Oh! Ooops! Did I write that for the world to see?) with  extremely limited experience, but later realized that while that factor did play a part, the bigger contributing factor was Aidan’s ever increasing sensory issues.

Every outing became emotionally and physically draining for me. He would run away from me any chance he got. He never even really seemed to have a plan. He would just run! In parking lots, at the store, etc. If I called out his name, or told him to stop, he would just run even faster. He could not understand the urgency or anger in my voice, he would just keep running like he was in his own little bubble. He did not understand, “no” and “stop.” I had to start keeping him strapped in a stroller, for his own safety (and mine).  I can remember being so jealous of the parents who could walk through the store as their child stayed right next to them (or at least close enough to keep an eye on).  Again, I thought this was just an age thing (as all of my friends & family told me). I had no idea that this was a glimpse of more serious things to come.

I told my husband that every day with Aidan felt like an ongoing struggle, and that I was worried about him. My husband reassured me that everything was fine. He didn’t see the things that I was trying to explain to him and he felt like Aidan was just being a typical toddler with the terrible 2’s. I agreed, and we figured that things would improve as his communication skills progressed.

It was an exhausting time. Aidan wouldn’t sleep. At night we would put him to bed at 7:00 and he would be wide awake until 11:00, and then he would wake up crying around 2am. I would rock with him until he calmed down and went back to sleep. He would wake up for the day by 6:30-7. He never woke up in a good mood. He was generally pretty pissed when he woke up.  It would take him a good 30 minutes to adjust to being awake. He also never napped. He would fall asleep in the car, but it would have to be a looong drive. And forget about moving him into his bed! He would wake up at the slightest touch and scream forever! My husband and I still laugh about how awful his sleep was to this day. We would barely BREATHE if Aidan was asleep! He always seemed so tired, but it was like he just COULDN’T sleep.

Things seemed to spiral downward by the day. By the time Aidan was 2 ½, he was beginning to lose the language and skills that he had once mastered. He stopped playing with the puzzles that he had been putting together since he was younger. It was like he forgot how to put them together. He would begin to try and just throw them down on the ground. I also realized that he would NEVER wave or say hello or good-bye to anyone anymore. He lost interest in other children at the park. Children would try to engage him, and he wouldn’t even acknowledge that they were there. He also lost interest in going to the park at all! My little boy who used to run all over the park, would no longer leave my side. He also became terrified of going on the swings. He wanted nothing to do with them.  If he did play, he seemed exhausted within minutes and would just lie down on the ground. It was so strange. He would talk here and there. Sometimes in complete sentences, but most of the time he was really quiet. He  could  say his ABC’s, count to 20, and sing several songs, but he didn’t know to say hello to someone or to respond when his name was being called. He could no longer identify his body parts (he was doing this at 15 months). This was when I really started to worry.

My husband and I took Aidan to the pediatrician AGAIN (this is the 3^rd pediatrician that we told about our “concerns”) and again we were laughed off. At this point, my husband thought I was losing my mind. EVERYONE thought Aidan was fine, why do I insist that something is WRONG!?

I confided in a friend about my concerns, and she said, “Do you think Aidan has Autism?” 

In the Beginning...

Our story is, sadly, like so many others. Almost 4 years ago I gave birth to a beautiful baby boy, Aidan. My husband and I watched him grow, hitting every milestone along the way. It was a wonderful thing to witness. He was always such a happy boy. Friends and strangers would always comment on his bright smile and curiosity in the world around him.  He loved being around new people and places and just always seemed to be such an easy going little guy. 

At 18 months, he had the acceptable amount of words for his age,  but even more sign language. I had started teaching him sign language at around 10 months, and he caught on pretty fast. At this point he could sign some things in complete sentences. He loved music, and he loved to play. I could take him to the park and watch him run around for hours. He was a climber from the beginning, so it was no shock to me how much he enjoyed climbing, sliding, swinging and exploring.  At the park he would run up to others and wave and say, “HI!”  It always made me laugh because he always had an intense way of saying “HI!” We would have play dates with a friend whose daughter was about 4 months older than Aidan. He would always try to kiss and hug the little girl, which she hated, but I thought it was the sweetest thing in the world. I had a caring little boy who truly liked to be in the company of others.


I specifically remember having dinner at a friend's house one night, when Aidan let out a little toot. Our friends started laughing and I looked at Aidan and said, "Aidan, what do you say?" and Aidan said, "Excuse me!" Of course it sounded more like "Cue Me" but they got what he said, and where shocked that he actually knew to say excuse me! 

Aidan would point to pictures in books when asked. He could point to all of his body parts. He had a leap frog puzzle with different colored cars on it, and you could ask him to put in a specific color car, and he would do it. He would look at me as I spoke to him. He would get really excited when Daddy came home from work...I had no worries. My little boy was right were he should be, and I was truly enjoying the experience of Motherhood.  Then things began to go South…